The Copaxone journey starts here

Yesterday I had my usual Wednesday morning of peace. This occurs when my aunt takes my two girls out to a local playgroup session and I manage to relax without having the baby monitor attached to my side, or a toddler asking repeatedly for sweets (until I inevitably give in, just for a bit of peace!) 

But this week's Wednesday wasn't the usual. Instead I shopped a bit, spending money on the girls again, and lost the first hour trying not to think about the second.

It involved a trip to the local hospital to see my MS nurse Fiona, where she was all set up with my Copaxone start-up kit.

A lovely rucksack was presented to me, inside of which was the myriad of accessories that go with taking the medication.

These include a sharps box for the discarded needles; a mini sharps box for going on holidays with; two fancy pouches to keep the pre-filled syringes in, marked out with the days of the week; two gel packs for heating or cooling as I see fit; two auto-injectors; an injection diary; a DVD on the process and an instruction manual of sorts.

And sitting on the desk, one pre-filled syringe all ready for me to inject.

After a quick chat it was time to get started.

There are nine injection points available to me - two thighs, two arms, two bumcheeks and three areas below and to either side of my belly button.

I decided to start on my bumcheeks as I figured it would be a difficult enough spot to get to on my own and having some instruction from Fiona would only be a good thing.

And it wasn't too bad. The actual injection was easy enough in the end and I'm already preferring doing it myself instead of using an auto-injector which I've had previously. 

It gives you more control and it was over in seconds. The only part that was hard going is the sting afterwards. It starts off as a tiny nip, growing into a serious enough sting but a few deep breaths and I was out the other side.

A red rash not unlike a nettle sting did appear after but it lasted about two hours at most and I was fine for the rest of the day.

It's some difference to Rebif and Avonex, both of which left me feeling groggy and as though I had the flu constantly.

I'm hoping to do my injections in the evenings from now on so will be giving myself the second dose tonight. Wish me luck! 

And so it begins ....again

Wednesday heralds the start of my new treatment, Copaxone.

As mentioned in the previous post, this is a daily injection so it will inevitably impact on my life a touch more than previous medications.

However, I am embracing the routine and staying positive as to the rewards it should bring.

I would be lying if I said I wasn't nervous because of course I am. It will take a few days or weeks to master the art of the injection, and then there's also the feeling that this is all that is left for me to try at the minute.

There are other options licensed for use in the UK but they are mainly kept for those who relapse more than I currently do, or as a last line of resort once these initial DMD's have been tried with no effect.

So it's sort of like I'm putting all my eggs in one basket and hoping with all my might that none of them break.

It can feel sometimes that my body is already breaking. 

Small cracks are appearing on the surface. 

My upper torso currently has no feeling, I've mentioned the dead right arm before and of course the usual fatigue, pain and bladder problems have been well documented.

But I can cope with those small ailments, they have seeped into my everyday life with such ease that I am carrying them without realising.

It's mad to think that I am now used to chronic pain. It's crazy to know how willing the human body and mind can be to taking extra burdens onboard.

But I am proof that this is the case. 

Now I want to see if I can stop those cracks from opening new wounds.

I have to hope that Copaxone is that sticking plaster, for it seems that there is no healing cure just yet.

Focused and hopeful

Lots has been happening recently so I'm going to start with the good stuff. 

Firstly, I went along to the MS information day organised by MS Society Northern Ireland at Titanic Belfast (I'm pictured below on the replica staircase from the ship) - it was a really well put together day, with a hopeful and refreshing talk about research. So much is going on, most of which is funded by the MS Society, and I left feeling that a cure is actually in sight, and possible within my lifetime. 

That blows my mind.

To think that someone somewhere is working on a thought and idea that is going to give people like me a chance to live a life without MS. Incredible.

This day was also really helpful for my mum and aunt, who went with me, and left with a better understanding of the illness. I have been pondering whether I really want to start back on disease-modifying therapies (DMT's) given that they involve injections, again.

I also suffered so much from side effects when taking the last ones that I'm nervous about how the new ones may affect me.

But the research talk made it very clear that treatment of this sort is essential. 

It's simply not an option or something I should be pondering over.

My mum has been, justifiably, worried about me starting again but the talk made her see that I need to start sooner rather than later.

It helps so much when those closest to me understand the process and the decisions I am taking.

And that leads me very well onto the bad stuff.

When I say bad it's not really awful, it's just not lovely either! In short I will be starting back on DMT's next week. 

I've chosen to stay clear of beta-interferons and all of their horrible side effects and instead will be starting on Copaxone. 

The reason I didn't go on it in the first place is that it's a daily injection and that will inevitably impact on my life slightly more than the ones that are only 3 times or once a week.

But it has no side effects bar some redness and irritation around the injection site and I'm hoping I can cope with that quite well.

I've also been suffering with a good bit of pain. My legs in particular ache constantly and my right arm feels as though someone has punched me very hard over and over again. But I am walking fine despite the pain and generally getting on with a hectic life now I have two little ones to look after! 

It's lovely to have people tell me I look so well just 12 weeks after having Lucy but as I always say, 'Never judge a book by its cover'. 

Multiple Sclerosis is frustrating in this way in that most symptoms are invisible and trying to get people understanding the condition can be quite difficult.

I hope if you're reading this that you are slightly better informed :)

As ever, I will try my best to answer any questions so please feel free to comment - or connect with me on Twitter @catdoran

Social media support

When I was first diagnosed I trawled the Internet to find people like me. I wanted to hear about young women who had lived a full and happy life despite the trials and tribulations of Multiple Sclerosis.

But I found it incredibly difficult to find an honest account of 'real' life following a diagnosis. It was really frustrating, especially as a journalist who spends most of my working life telling the tales of others. It was this lack of proper stories that led me to start this blog.

In the years since, Twitter and Facebook have become a part of everyday life and thankfully social media has introduced me to many others like me.

There have been times when I have felt down; demoralised - and all it has taken is a short tweet and within minutes there is support from a whole host of my followers.

Not just those with MS, but people who have interacted with me because of my children, or because of my work.

Their responses and words have comforted, reassured and encouraged me at various points, and for that I am always thankful.

To some extent I would like to think that these virtual 'friends' are also people with whom I would meet for a coffee and a chat if they lived nearby.

There are too many to name but the list is fairly extensive.

However, today I want to mention one in particular. She tweets under the name @innocentcharmer. But her real name is Kara. She is married to Ashley and they have three beautiful children, Grayson, Addison and Deacon.

We connected firstly because of our kids. Addison is a few months younger than Charlotte and Deacon was born just a week before Lucy.

However, we also have MS in common because her late grandfather had the condition and passed away when Kara was just two months old.

Kara is an incredibly inspirational woman. Her eldest son Grayson has a myriad of health problems yet no medical team can say exactly what it is he has. In essence he has a Syndrome Without A Name (SWAN). 

Young people like Grayson are few and far between; he is essentially one in a million.

As a result Kara & her husband battle on a daily basis to get access to the support and equipment he so desperately needs.

Last year they decided to raise funds themselves for equipment he needs, as well as the charity SWAN UK, by holding a huge fun day in his name. 

It has now become an annual event. But this year Kara touched my heart when she got in touch to say that this year's fun day would also have MS Society UK as a recipient of some of the monies raised, despite the fact that they desperately need to purchase Grayson a walker which the NHS will not provide for.

She has told me since that she relayed my story and circumstances to those who came to support Grayson, and many of them sent messages of support.

Tomorrow, on Facebook, Kara is hosting an auction to raise further funds for this year's pot - and it would be amazing if you would take five minutes, look at the prizes and if something takes your fancy, place a bid.

Naturally the highest bidder wins and every penny is going to brilliant causes.

Stories like hers, and the online support I get from people like Kara, are what make the new world of social media so fantastic.

If you want to connect with me on Twitter please pop over and say hello - @catdoran

Welcome to the world Lucy

It's only taken me two weeks to post this announcement (which I consider a triumph!) but she has arrived ... my precious second daughter. 

Born on Monday 1st July at 7.48pm by emergency Caesarean section, she weighed in at exactly the same weight as her big sister, 7lbs 12oz, and is simply perfect.

It wasn't be easiest labour, with me contracting irregularly for 12 hours before being transferred to a midwifery-led unit. There was much discussion about my 'case' prior to this move from the ante-natal ward as the midwifes couldn't decide where to send me - with MS being the main worry.

Some were happy enough for me to go midwifery led, counselling that I had had a relatively straightforward pregnancy, was presenting no symptoms, wasn't in a relapse and was off all of my medications.

Others however were erring on the side of caution, preferring me to go straight to the labour ward. I wasn't keen to go this way as my birth with Charlotte had been very medicalised because my waters had broke before I was in established labour.

I was determined that this second birth would be more natural and I was over the moon when they agreed to let me go to the midwifery led unit. Joe on the other hand was less pleased but was reassured by the knowledge that the labour ward is right next door! 

Once there I thankfully started to get going and four hours later I had progressed from 6-9cms. All good news except when examining me the midwife firstly broke my waters (of which there was lots!) and secondly, felt a nose! Basically the baby was facing the wrong way. 

Much madness ensued, with the room filling with people very quickly, and I was moved swiftly to the labour ward next door. A doctor was called, he examined me and when baby refused to budge, the decision was taken to give me a c-section.

I was half relieved, half gutted. Relieved because it meant a spinal block, and after surviving for four solid hours on simply gas and air, the thought of no pain was palpable. But of course I was gutted to be having such major surgery after getting so far along by myself. 

However, getting baby here safely was the priority and both Joe and I were happy to take the doctor's advice.

An hour and a half later, in theatre and with Joe decked in scrubs beside me, the doctor peeked his head over the dividing sheet and asked us, 'Do you know what you're having?' We replied, 'No' and literally ten seconds later a wee head popped up and he declared 'It's a girl!' 

So here she is, our second bundle of joy, a beautiful daughter, a sister for Charlotte and a source of much love and cuddles .... I'm so very proud to introduce LUCY ELLEN DORAN! 

The end is in sight

All in all, it feels as though this pregnancy has gone fairly quickly but now that I am officially off on maternity leave the days are going very slowly. The anticipation of meeting our next baby is killing me and I think not knowing what we're having is making me all the more impatient! 

It has been a straightforward run up to now, with only minor pregnancy niggles here and there. But this last four weeks or so have been slightly tougher than I remember from my first pregnancy.

Sleep is near on impossible and I have commented a few times that bedtime is torture rather than a welcome rest. This is because my left sciatic nerve plays up, and those horrible leg cramps are still bothering me.

So if baby makes an appearance a few days before its due date I will be so thankful.

This wee one also seems to kick a lot more and I have been getting Braxton Hicks from 26 weeks, and lots of them. I have to admit, I am so used to them now, and they can be painful enough, that I am starting to wonder if I'll know when the real ones start. My waters broke with Charlotte so it was hard to confuse the start of labour and I'm sort of hoping that happens again otherwise I may ignore the early signs of labour.

My iron levels are also low this time round so I have been given extra tablets to take but it's not something that's overly concerning me.

Otherwise, I have been nesting a good bit. We have had the painter in freshening up the conservatory, kitchen and living room, as well as new furniture delivered for the conservatory. And I am spying small spaces at every turn that 'need' cleaned immediately! 

Of course, I also have Charlotte to worry about this time round too. She is generally very easy going but since I finished work she has had an ear, throat and chest infection and she doesn't do being sick very well. So it's been a long week! 

On another level I think she is also very aware that this baby is coming very soon. She talks all the time about her 'wee baby' and how it's going to be 'so cute' which is brilliant as I know she's ready to be a big sister but there's no denying that she also recognises that mummy might not just be as available as she normally is.

Her routine is also all over the place as she isn't used to me being at home every day. My mum is brilliant with her & they have this wonderful bond already. And I think she is missing her one-on-one days with nanny.  She told me yesterday, 'When you and daddy go to work, and grandad is not there, I will stay with my nanny" ... proof, if we needed it, that she cherishes their days together. So, both she and I are looking forward to them getting some time on their own next week.

I am mostly looking forward to putting my feet up for a few hours ... if I can ignore the urge to sort the hot press or clean the inside of the dishwasher!

Two-thirds down, 13 weeks to go!

So, that's me, in the third and final trimester and it seems to have come around really quickly.
It has helped that the second trimester occurred between Christmas and Easter, and they seemed so close together this year.
They were also great milestones to mark the key turning points in this second pregnancy.
And, as predicted, the second trimester was relatively good to me. It's the one most pregnant woman look forward to and it's no wonder why.
It's when the sickness and tiredness starts to ease and it's before the baby gets so big that you can barely move.
And the eight weeks which comprised months five and six have served me well.
There's very little to report bar the niggling pregnancy gripes and groans like leg cramps and a touch of insomnia.
However, I have been getting Braxton Hicks from week 24 this time, which I thought I was imagining them until I looked it up.
But no, it's perfectly normal to get these from week 26 or so, so I'm just a little ahead.
My cousin has just given birth to her second little boy and when I mentioned it to her she said she was the same.
And she had relatively quick labours, with number two coming in less than four hours from start to finish. I'm liking the sound of that so I'm grinning and bearing them.
But they are much more intense than any I had with Charlotte, and any I had with her didn't kick until the final two weeks.
In the main however, pregnancy has been treating me well. I am definitely one of the lucky ones who finds that their MS goes into remission while expecting and I'm enjoying feeling the best I have for some time.
However, it would be remiss of me not to mention the increasing sense of dread I am feeling as regards relapsing once the baby is born.
Most days, I try not to think about it, but it's such a real possibility that it can be difficult to ignore the voices in my head.
A few weeks ago I had my routine six month check up with my MS nurse Fiona and I mentioned to her that I was nervous.
She was incredibly helpful and reassured me that this was perfectly normal. She also allayed my fears as regards choosing a Disease Modifying Drug (DMD) going forward.
Ever since I gave up on both Rebif and Avonex, owing to their side effects, I have been tortured with the thought of having to try something else.
But Fiona was quick to tell me that this was something that didn't need to be my priority until after the baby arrives, and even then, to give myself some time before making that choice.
I am so relieved to know that pressure does not exist as I am so looking forward to those early weeks when the baby arrives.
It's a precious time that you never get back and I cannot wait to meet this new bundle of joy


PS. As ever I am late posting so I actually only have 11 weeks to go :)

Hugs, kisses and empathy

A while back, just after I had Charlotte, I was interviewed for parenting website Parentdish. It's a wonderfully informative site and I was delighted to be asked to talk about my decision to have children following my diagnosis.
I think the only way to educate people about MS is to talk about it. It's what I do here and it's something I don't hide from many people. If anything, I'm probably too open, but that's just my nature.
One of the comments on that post was from someone who obviously has no idea what having MS entails because she wrote that I was insensitive and selfish to have children when I knew that I had MS.
At the time I was incensed, disgusted and annoyed that someone who didn't know me, or anything about MS, would cast such a judgement.
After all, there are plenty of parents out there that face illness and much more, after giving birth to their offspring.
For us, it was never really an issue. Both Joe and I have always wanted to be parents and we took the attitude that MS is NOT the worst thing that could happen to me.
More than that, I personally feel that my children will grow up with a more rounded view of the world. They will see that not everything in life is easy.
And I can already see in Charlotte, who just turned two in November, a sense of empathy, caring and love that can only come from having a 'sick' mummy.
Last week my heart nearly melted when I said I was going to bed for a quick lie down (my legs have been playing up and rest, however small, helps) and she was straight over giving me a hug, saying 'Aww, mummy's not feeling well. I kiss it better mummy'.
I was quick to say I wasn't really sick, just a bit tired, because of course I have that maternal instinct where I want to protect her from the harsh realities of what MS means, but I am also incredibly proud of the fact she is so sympathetic.
She's a hugs kind of girl, who squeezes so tight sometimes I can hardly breathe. And I think that's what matters. She knows love. I must kiss her wee cheeks about thirty times a day.
And when I am well, we bake buns until we can eat no more, we dance around the kitchen like eejits, we play in the garden even when it's cold.
I make sure that she sees that life can be good, and it's the little things that count.
That, for me, is enough.
I am proud to be a mum with Multiple Sclerosis and until you live a day in my life, or walk a mile in my shoes, don't judge me or question my choices.

Photo courtesy of www.stephenlatimerphotography.com

Almost halfway there!

Ten days late but here's month four! I'll try harder to be on time this month.

Month four

One of the most annoying symptoms of MS that I have is one that's not exactly 'sexy'. Basically my bladder doesn't operate like anybody else's, if I need to go, I need to go and that happens a lot. In medical terms they call it 'urgency and frequency'. See, not very sexy.

It was one of the symptoms that presented itself WAY before I was diagnosed and the one that I was most thankful to have an answer for once I the diagnosis of MS was given. And I know that sounds a bit mad but honestly, I thought I was going mad before the diagnosis. In fact, I even had hypnotherapy because so many people had told me that my need to 'go' was in my head. 

And it wasn't. Well, not like everyone thought.

Because essentially it was my head, but it was just the MS lesions. My bladder wasn't behaving because the signals from my brain are all out of sync.

And once I got the diagnosis I was finally given medication to help.

Once a day I take a little blue tablet and in the time that I have been given it, my bladder mostly behaves. At least 98% of the time.

Now, in pregnancy, I have stopped taking the little blue tablets and while I know it's incredibly important for the baby, I cannot say that stopping the medication was something I looked forward to.

It gave me my life back and I don't say that lightly. 

However, as anyone who has been pregnant knows, your bladder is something that plays up and without my medication it has been doubly-hard to deal with. 

But thankfully, in month four, the symptoms seem to be easing.

For weeks I was getting no proper sleep because I was up every two to three hours and combined with the normal tiredness I was starting to get down about it.

So, it's great to finally be past that stage.

Otherwise, month four has been quiet. The baby is growing but my normal clothes mostly fit, bar my trousers which need an elastic in the buttonhole to make them stretch a but more! 

Cravings are minimal but I am eating more often. Smaller meals, but more often, because if I don't my tummy rumbles and I can't think straight. 

But generally this pregnancy is going well and for that I am incredibly thankful.

Photo courtesy of www.stephenlatimerphotography.com

We're having another baby! Months 1-3

It's so ridiculously late but I am hoping to blog every month about my second pregnancy so it makes sense to talk about the first three months before I catch up and post month four!

As regards planning this second baby, me having MS was definitely a huge consideration. First of all my husband and I had to decide how we would manage and when the time would be right.

In the 18 months following Charlotte's birth I was convinced that we would wait until she was at least at nursery before having any more. Kids are hard work and I had a tough year last year with two relapses hitting me hard in a six month period.

But as we reached the end of 2012 it became clear that health-wise I was doing the best I had for a long, long time.

I had already stopped taking any disease-modifying drugs, after feeling that the side effects were too difficult to manage, so when the discussion of a second baby arose I have to say we were both positive about taking the leap sooner rather than later.

MS is so unpredictable that it seemed silly for us to try and map out the future perfectly. Instead, we took my good fortune and relatively good health as a sign and decided that there was no better time than to have baby two.

When I fell pregnant with Charlotte I have to say I wasn't counting the days until I could take a pregnancy test, I just felt if it happened then great but with this one, I went through five tests, all coming up negative, before number six showed the faint red line we were hoping for. It was a strange feeling because I knew I was testing too early with the first five but I was so convinced that I was pregnant that I couldn't help myself! And when we found out it was an amazing feeling.

It felt, once again, that we had made the right decision, that falling pregnant so easily was a sure-fire sign that this baby was coming at the right time.

The following weeks were pretty tough. I suffered from morning sickness with Charlotte but this time I was nauseous morning, noon and night. I could hardly eat and even now, at week 20, I weigh less than when I first fell pregnant.

My body seems to do that though, as I lost quite a bit in my first pregnancy too.

The tiredness was also really tough but I think everyone gets that and I always take it and the sickness as a good sign that the baby is growing well! My husband was really good and let me spend quite a bit of the first 13 weeks in bed when I needed to rest.

We also kept the pregnancy much quieter this time, not really telling anyone outside of our close family until the 13 week scan and it was really hard.

But it was lovely to have the scan the week before Christmas and let everyone know at Christmas gatherings - and everyone has been so excited for us.

Cravings wise I haven't had many but in the early days I was eating whatever I could manage and unbelievably, for about two weeks, all I wanted was fast food.

I rarely eat at the chip shop or at McDonalds and the like, but I ate about six bags of chips over those two weeks, absolutely covered in salt. Very strange.

Then the week before Christmas we were at my husband's parents' for a lunch and I was suddenly hungry. I think my mother-in-law couldn't believe her eyes as usually I'm a small enough eater, but on this occasion I had about three helpings of potatoes.

My appetite was back with a vengeance ......

A basic human right has been denied

As the High Court in Dublin denies Marie Fleming, who has Multiple Sclerosis, the right to end her life with the assistance of another (see the news piece here) I reflected on the outcome of her case in a piece for the paper I work for ... it's posted below and I have to say it was an extremely difficult piece to compose. But I hope it gets people talking and thinking, not least about MS in general, but about the need for us, in the UK and Ireland, to see that assisted suicide, if requested, is the only dignified option in this situation.

*******************************************************************************************************

Whenever I hear of a person with Multiple Sclerosis applying to the courts for the ‘right to die’ my heart sinks. It brings home to me, once again, the harrowing side of the illness with which I have been diagnosed for nearly four years.

It pains me to know that someone who is dealing with the effects of MS simply cannot take anymore. 

The illness has many symptoms and many manifestations. Personally, I have relapsing/remitting MS. This means that I have periods when it flares up and times when I thankfully have some respite.

Last year was one in which I unfortunately seemed to be in more periods of relapse rather than respite. And while I had experienced pain before, the levels rachetted up a gear, my medication levels subsequently increased and there were weeks when I had to employ the use of a stick. 

As someone who prides themselves in seeing the positives of any situation, it has to be said that there were times in 2012 when I struggled to find my smile, my verve, my get up and go.

And looking back at those periods of ‘darkness’ there is no doubt that I can see why someone who is constantly in that pain/situation/place would sometimes find it difficult to see any light at the end of the tunnel.

From what I can gather Marie Fleming has found herself in that place. She described her situation to the court extremely eloquently, with the judges accepting that her “body has been ravaged by the insidious disease to the point where she is now almost immobile, that her life has been rendered miserable and that she suffers great pain and distress.”

To hear these words are enough to fill my eyes with tears because I hate to imagine that this is what may lie ahead for, not just me, but for many who have had the unfortunate diagnosis of Multiple Sclerosis.

And it’s even more poignant to know that someone who has faced the illness with such dignity is now saying ‘enough is enough’.

Now that this time has come, Marie is asking the courts to allow her to die with dignity, surrounded by her family, safe in the knowledge that they then would not face imprisonment.

However, this has been denied. This, in spite of the fact that suicide itself is no longer illegal in Ireland. Yet, because Marie is now so ill she finds herself incapable of carrying out that act for herself, she will instead be left in pain and distress until she passes away naturally.

I cannot deny that it’s a hard case to rule on, not least because the courts have a duty of care to those less vulnerable, but in the case of Marie Fleming I cannot help but feel she has been denied a basic human right.

The court itself said that she was “the most remarkable witness which any member of this court has ever been privileged to encounter” and I have silently sat today applauding her courage and determination in taking her case to the High Court.

It pains me to say it, but I believe if I was facing the same situation many years down the line, there is every chance I too would wish to die.

I can understand how the pain would take over. It creeps into every aspect of your life. It makes you weary, it never gives up.

The distress caused by a continued battle against the effects of MS cannot be underestimated. Its symptoms can affect nearly every part of your body. There is the prospect of immobility, loss of eyesight, spasms, bladder and bowel incontinence, nerve pain, fatigue ... the list goes on. 

Thankfully, it’s not a situation I currently find myself in, but the nature of Multiple Sclerosis means that there is no knowing what lies ahead. It’s an illness which simply does its own thing, and no matter how positive and upbeat I try to be, there is also no knowing if the situation Marie Fleming finds herself in would eventually come to my door too. 

I would like to think that if it did, I would be allowed to die in peace and with those I loved at my bedside. As the law currently stands that’s an impossibility.